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AAMFT Consumer Update
Chronic Illness
 Approximately
35.3 million Americans, young and old, are limited in their daily functioning
because of a chronic mental health or physical health condition. For
the vast majority of these individuals, family is their first line of healthcare. Whether the member is a child with cystic
fibrosis or an adolescent with diabetes, or a parent
with multiple sclerosis or a grand parent with Alzheimer's
disease, it is the family, first and foremost, that cares for an ill
loved one.
One member's chronic illness influences the lives of
everyone in the family. Roles and routines change.
It may seem as if the medical professionals that care
for the ill family member become part of the family. The demands of caregiving must be negotiated. Family members' emotions
may be on a continuous roller-coaster ride. On the
other hand, families may come together and grow closer.
Their lives may take on new meaning. They may find rewards they had not expected on their journey through illness. The only certain
thing is that chronic illness is a family
experience, one that is shared by all.
How can chronic illness affect the
family?
There are several ways that chronic illness can
influence family life:
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Daily routines may change
because the limitations of the ill member and the demands
of treatment may require that others be more available.
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Families may need to share
caregiving responsibilities; this helps all members feel they are
contributing to a loved one's welfare and it also protects any
single member from caregiver fatigue.
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Family members may experience strong emotions, such
as guilt, anger, sadness, fear, anxiety and depressed mood. These are
normal reactions to stress. It is useful to talk
about these emotions within the family.
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The ill member may need to find ways to be as
independent as possible, given the limitations
that the illness causes.
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Despite the demands of the illness, families may need
to work hard to maintain a sense of
"normal" life. This can benefit the ill member, as well; it may help him or her integrate into family life more and
may reduce the ill member's sense of guilt
regarding the demands the illness places on the family as
a whole.
When should the family seek help?
At any time during the life of a chronic illness, family
members or the family as a whole may need support
from a trained professional, such as a Marriage and Family
Therapist (MFT). Signs to watch for include:
- Difficulty making the
transition from the demands of one phase of an illness to
another.
For example, family members
may remain overprotective of the ill member long
past the crisis phase. The ill member may feel he or she is being overly
controlled and may rebel by not complying with treatment or medication, or becoming angry with family.
Oftentimes, caregiving falls
to a female member of the family who may
become exhausted by the 24 hour per day demands of the
illness. The primary caregiver may be hesitant to ask for help, feeling that it is her responsibility. But she may also show signs
that may be a call for help: sustained exhaustion,
shortness of temper, depressed mood, loss of interest
in daily activities, and changes in sleep or eating. These may indicate
that the caregiver needs more support and the family needs to become more involved in caregiving.
These changes may be related to illness or personality changes in the ill
member. A sudden decline in the health status of the ill member may send shock
waves through the family. The ill member may also experience periods of
depression, even thoughts of suicide, which are common with persistent illness.
Well siblings may experience problems in school.
An adolescent may act out when a parent is ill. A couple may be in conflict
when a child or parent is suffering. Family members may develop physical symptoms
that are similar to those of the ill family member.
In any of these circumstances,
the family's primary care provider can act as a resource for referring the
family to a family therapist who is experienced with illness and collaboration with
medical professionals.
What kinds of interventions
are commonly used?
Families seeking help can
expect a variety of useful interventions:
It is valuable for the whole family, including the ill
member, to meet with a
qualified Marriage and Family Therapist. During sessions, the therapist can
help the family discuss how they are dealing with the illness, make decisions
together, and learn how to utilize their own internal strengths and
resources to address interpersonal problems. Family therapy sessions may also
include medical professionals who are involved with the ill member's treatment.
This provides an opportunity for clarification of treatment and other issues,
such as reasonable expectations for the future functioning of the ill member.
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Multi-Family Group
Psychotherapy
Families can benefit from
meeting with other families who are also
dealing with chronic illness. These family group meetings are usually time
limited (8-12 weeks) and include an educational component as well as
discussion and problem solving.
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Individual Assessment and
Treatment
Some family members may be
experiencing symptoms of depression or
anxiety that need to be addressed through individual assessment, appropriate
medication, and individual therapy in conjunction with family therapy.
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Support and Psychotherapy
Groups
Many organizations offer support
groups that focus on a specific
illness. These groups are a valuable addition to family and other forms of
therapy. For persons needing more support, group psychotherapy is often also
available.
Consumer Resources
Organizations and Internet
Sites
The text for this brochure was
written by
David Seaburn, PhD.
© 2001 by the AAMFT
Click
here to purchase this or other informative materials from AAMFT.
Item #1070
Keywords: long-term illness,
caregiving, caregiver burden, caregiver burnout, unipolar disorder,
bipolar disorder.
Marriage and family therapists are mental health professionals who treat a
wide array of disorders, working with individuals, couples, and families.
Marriage and family therapy clients report that they are highly satisfied
with the services they have received, and research shows that marriage and
family therapy is a cost-effective, short-term, and results-oriented form
of treatment.
The American Association for Marriage and Family Therapy (AAMFT), the
professional organization representing marriage and family therapists,
believes that therapists with specific and rigorous training in marriage
and family therapy provide the most effective mental health care to
individuals, couples, and families. This brochure is courtesy of:
the AAMFT.
Visit the AAMFT
TherapistLocator.net, a public service of the
AAMFT. There you will find information about a range of problems facing
today's families, and you can search for a qualified family therapist in
your area.
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